To the Person Who Feels Awkward Around My Teen With Down Syndrome
I saw you when you looked up with the familiar, inquisitive stare. When our eyes met, I noticed it.
Fear? Anxiety? Maybe.
I know when you see us, we may look a little “different,” and we may act differently, too. When we walk through the grocery store aisles, or any public place, I usually hold my daughter’s hand, or she holds my arm as we walk. She can tire easily and is easily distracted. Sometimes she makes loud noises — not always words, but still, her way of expression. For her, a simple trip can be complicated. The lights, the noise, the people; they can be exhausting.
When she was just 2 or 3 years old, I don’t think many people took notice, and we didn’t receive all these curious looks. But she is 13 now. She has Down syndrome. She is awesome.
To the person who feels awkward around my teen, I get it. The unknown can be scary. I honestly felt that way when my daughter was born. At 22 and with an uncomplicated pregnancy aside from preeclampsia, I had no idea my daughter would have an extra chromosome. I was terrified then, only because of my lack of knowledge. I’m not excusing your stare, but I do understand it.
Go ahead and ask me. I mean it. You can ask me if she has Down syndrome. You can even ask me why I hold her hand. I’ll probably answer and explain that she has some difficulty with sensory processing. For her, that means she can have a hard time interacting with people and her environment. Sometimes it means she has difficulty walking — hence the hand-holding.
You can even ask me if she can talk. I’ll probably tell you that verbal communication is hard for her, and she has a difficult time telling me her basic needs. I usually have to use my mother’s intuition to guess what’s going on. She does receive speech therapy, and my prayer is one day she will be able to say, “Mommy, I love you.”
You can also ask me about her movement. She sometimes has a lot of energy and may rock back and forth. My husband calls it the “Tayler Dance.” She may reach out and grab your arm. She’s definitely not trying to hurt you. That’s just her way of saying “Hi!”
Just know that I’m cool if you ask, and I really appreciate and admire your attempt to understand and learn more.
It’s OK to say “Hi.” She might not look you in your eyes. She may even give you some “teenage attitude” and completely roll her eyes at you. It really depends on her mood. Either way, she hears your words, and if she feels like it, she may say “Hi” back — perhaps even several times. She loves people and loves to give sometimes-tight hugs. We are working on what is socially appropriate, but it seems in her mind there can never be a bad time to give a hug.
Please know that I can understand why you may feel a little bit awkward, but my daughter is full of love. I love her, and if you spend a few extra minutes with her, you might, too.
To love and identify with someone who resembles your reflection in the mirror may be relatively easy. But to make an attempt to understand an individual who seems “different” from you — I believe that’s empathetic, character-building, “breaking-down-walls” behavior.
If you see my daughter, Tayler, or anyone else who looks, believes, acts, or even smells “different,” try not to feel awkward. Take a second and smile. And if you are really brave, be like Tayler and offer a hug!
The Mighty is asking the following: “Staring” is a topic that comes up so much in our community. Tell us about one unforgettable “staring” experience you or someone you love had that’s related to disability, disease or illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!